31 August 2012

Day 24 - First time out of his room

Facebook posts from 08/31/2012


Caleb gets to be unhooked from his IV stand (we call it Elder Tree) for an hour today so he can have an MRI. (He is pretty excited about that!) They docs are still trying to figure out what is causing his shoulder and neck pain...



video









Well, we just found out why Caleb has been having shoulder/neck pain. He has an infection/clot in his jugular vein. The good news is the docs know how to fix it! He will be having his Hickman (chest catheter) removed this afternoon and will have a PICC line placed in his arm instead. They will also adjust his antibiotics to get rid of the infection.
The doc came in 20 min. ago to tell us the news and the only thing Caleb said was, "But mom! It's two o'clock! The BSU game is starting!" 









Facebook comments:


CNT: the picc line will be able to stay in longer with less risk of infection. Still praying for him and your family!
August 31, 2012 at 5:24pm · Like

HG: Poor kid! At least the docs can fix it. And like always, he seems to be pretty up beat. Go BSU!!!!
August 31, 2012 at 5:31pm · Like

AUU: PICC lines are the best!
August 31, 2012 at 6:02pm · Like

CKC: Groan...then yay! Always amazed when the realization of how great the blessings are by how much worse things could have been! My prayers are with your family! <3 span="">
August 31, 2012 at 6:08pm · Like

DL: glad he stuck by saying that it hurt and didn't discount it!!! even better they figured it out!!! whew!!!
August 31, 2012 at 6:19pm · Like

GL: So happy they figured it out. And that Caleb can watch the game, go BSU!!!
August 31, 2012 at 6:26pm · Like · 1

JAT: i love caleb..
August 31, 2012 at 8:00pm · Like

MWL: Do they have to put him under to do this? When my kids had the PICC lines in they were awake (not fun to watch) I am happy he wants to watch the game! We are still praying for all of you guys.  =)

August 31, 2012 at 10:22pm · Like

Day 24 - ANC of 2000

Facebook posts from 08/31/2012

Caleb's ANC is 2000!! (1500+ is normal range). He hasn't been above about 300 since before he was diagnosed! (google ANC for what that means...I'm on my phone and don't want to type it all out with one finger...lol)


Facebook comments:

WBD: Yeah!!!
August 31, 2012 at 12:53pm · Like

PF: Praise God! That is awesome!
August 31, 2012 at 1:04pm · Like

SK: Yay! We're root'n for ya, Caleb!
August 31, 2012 at 1:38pm · Like

AH: That is wonderful! :o)
August 31, 2012 at 2:44pm · Like

KR: Awesome news!!!
August 31, 2012 at 3:33pm · Like · 1

DL: yeah baby!!! time to come home!!!!
August 31, 2012 at 5:13pm · Like

SJ: EXCELLENT news!!!
August 31, 2012 at 5:41pm · Like

MWL: Yay! I know what that means and I am doing the "happy dance" over here!
August 31, 2012 at 10:23pm · Unlike · 1

TRL: Soooooo happy to hear this!!!!!!!!
September 1, 2012 at 9:13am · Like

TBK: su--------weeeettttt.
September 1, 2012 at 11:20am · Like

KB: Yeah!!! That is great news!!
September 1, 2012 at 7:00pm · Like

RRS: African National Congress??????????
September 1, 2012 at 10:58pm · Like

RRS: Arkansas Northeastern Conference?????
September 1, 2012 at 10:59pm · Like

RRS: Advisory Neighborhoods Commissions??????
September 1, 2012 at 11:00pm · Like

MJ: Absolute neutrophil count
September 2, 2012 at 12:06am · Like

HT: That is great news!!!

September 4, 2012 at 10:22am · Like


29 August 2012

Day 22 - Almost completely bald

Facebook post from 08/29/2012

All that's left of Caleb's hair! Does it look like Hawaii to anyone else??






Facebook comments:

ATG:I miss Hawaii...hahaha
August 29, 2012 at 8:05pm · Like

DC: Hawaii was petty awesome!
August 29, 2012 at 8:35pm · Like

APD: it sure does......
August 29, 2012 at 8:48pm · Like

ALS: love the island chain :) thats cool!!
August 29, 2012 at 9:18pm · Like

GL: And he's even a handsome dude from the back! Love bald, and Caleb, you've got style too!
August 29, 2012 at 10:30pm · Like · 1

MT: Haha it does look like Hawaii!
August 29, 2012 at 10:32pm · Like

MWL: Hahaha....that's very funny.
August 29, 2012 at 11:09pm · Like

LPS: well at least we can be KIND of sure he wont have a bald spot on the back of his head when he is older... looks like that hair is pretty strong. haha
August 30, 2012 at 9:10am · Unlike · 2

TBK: bless his little heart......

August 30, 2012 at 4:36pm · Like

27 August 2012

Day 20 - Rest and pain

Facebook post from 08/27/2012

Day 20 - He has had a lot of pain in his shoulder and arm the past few days, so later tonight he is going in for a CT scan...and possibly an MRI. He didn't sleep very well last night, but he just ate lunch and conked out, so I'm headed home now.
Sweet dreams Brother! 
xoxo, Mom




Facebook comments:

SA: Poor thing! Praying here for him
August 27, 2012 at 4:39pm · Like · 2

RRS: Snug as a bug in a rug!
August 27, 2012 at 10:49pm · Like

PF: Such a handsome young man. Praying for him and you and your family.

August 28, 2012 at 9:17am · Like

26 August 2012

Day 19 - Loosing more hair, gaining more faith





I heard this song while driving home from visiting Caleb at the hospital tonight...and it reminded me of how much God loves me, and that he is helping us get through the ugly stuff and helping us see all the blessings he has given us.
The Lord has blessed me with simple faith.
If I pray for help, He will give me strength.
I will do His work. I will gladly serve.
I'll follow Him in faith.
The Lord has blessed me to feel His love.
I have felt His promptings and learned to trust.
So in all I do, I'll be faithful to
The things I know are true.
The Lord has blessed me in many ways.
With a thankful heart I will sing His praise.
I will raise my voice and proclaim my choice
To follow Him in faith.

25 August 2012

Day 18 - Facetime is the best!

Facebook post from 08/25/2012

I LOVE FACETIME!! We can have family prayer and scriptures with Caleb while he is in the hospital! He has also been able to attend seminary and some of church using FaceTime! So grateful for technology!!




Facebook comments:

MWL: Wow...I didn't know you could do seminary online..so cool.
August 25, 2012 at 11:29pm · Like

KK: Seriously! That's awesome!
August 25, 2012 at 11:48pm · Like

MJ: His sister takes the iPod to seminary, and then he just facetimes her and listens and participates that way!
August 25, 2012 at 11:49pm · Like · 2

ZZ: Seminarys started down there already!?!
August 25, 2012 at 11:57pm · Like

24 August 2012

Day 17 - Going bald

Facebook post from 08/24/2012

Today was hard. Chemo finally caught up with Caleb and he asked me to shave his head so he would have less hair on his pillow and sheets. He was pretty upbeat this morning, but around noon he just got so tired that he fell asleep sitting up and he also had great pain in his left shoulder that brought him to tears. It is so hard to watch my boy endure this...but he is being really strong and he has a lot of supporters! I know that some of his cousins and uncles have already (or are going to) shaved their heads to show support for him. It is comforting to know that so many of you are praying for him and our family! Thank you doesn't seem to be a big enough word...



Facebook comments on this post:

KHB: Is all of this expected? My heart hurts for him. Praying for this to be over soon.
August 24, 2012 at 11:21pm · Like · 1

MJ: Yes...all expected, just harder when it's real.
August 24, 2012 at 11:37pm · Like

HMM Ur in our prayers in Alaska sweet Caleb I'm so sorry ur having this great trial and mom and dad hang tough we r sure praying! Never met u personally but love Lila and Jo Jo like our own :)
August 25, 2012 at 12:40am · Like

MWL: I am sorry Caleb is feeling so yucky tonight =( We will pray extra hard tonight....for a good night sleep.
August 25, 2012 at 1:09am · Like

GP: Praying always <3 div="">
August 25, 2012 at 1:33am · Like

ESL: This is so sad to hear. What the pain in his shoulder from is PICC line??? I used to get some pretty bad pains in my should area from my PICC line, I put a heating pad on and it helped take away the pain. You guys are amazing stay so faithful as you go through these trials.
August 25, 2012 at 1:45am · Like

SA: More prayers here, he is such a trooper. I just keep seeing that sweet little guy when he was little. What a tough, strong young man he is today
August 25, 2012 at 7:32am · Like

SJ: Sad day! For what it's worth though . . . he has a really nice shaped head for being bald :)
August 25, 2012 at 8:31am · Unlike · 2

AMHS: Keep fighting the fight Caleb...we're all behind you! Brother Savage says "He's in"....and shaved his head today too!
August 25, 2012 at 10:49pm · Like

22 August 2012

Day 15 - 1st day of school

Facebook post from 08/22/2012

Caleb started school today...lol! He got some homework from a few of his teachers so he is taking a break from Kingdom Hearts to work on it! :) I'm glad he is feeling a little better!





Comments from Facebook:

HG: The kids and I want to FaceTime him. Is he up for it? When is good?
August 22, 2012 at 12:14pm · Like

MJ: When? He likes to FaceTime! :)
August 22, 2012 at 12:27pm · Like

CTS: Hope I feel better soon... We are thinking of u...
August 22, 2012 at 3:23pm · Like

CTS:Oops typo.... Hoping he is feeling better soon...
August 22, 2012 at 3:24pm · Like

LS: i want homework that involves markers...well i guess i kinda do...highlighting numbers...eh...

August 22, 2012 at 7:47pm · Like

19 August 2012

Day 12 - Weight gain

Facebook post from 08/19/2012

Day 12 - Caleb has lost about 7lbs since entering the hospital. The docs told him today that if he didn't stabilize or gain weight by tonights weigh in, he would have to take some additional meds to help his appetite. He just sent me this text message. 




jkkjhkjh)


18 August 2012

Day 11 - Sleepover at the hospital

Facebook post from 08/18/2012

Day 10 - Spending the night with my boy. He had a pretty good day today...but didn't have any company all day. I spent the whole day cleaning the house, doing laundry, restocking the fridge and the pantry, and going to the doctor for me (funky knee pain)...so I decided to just stay the night and hang out with him for part of the day tomorrow. He mostly played Kingdom Hearts on the PS2 all day.




Facebook comments:

MLW: Ask him how far along he is in the game...so we can make Ian jealous...lol.  ;)
August 18, 2012 at 11:51am · Like

Caleb: I am just about to beat the game. How far is Ian?
August 19, 2012 at 2:41pm · Like

IL: My copy of Kingdom Hearts broke. I beat Kingdom Hearts II though

17 August 2012

Day 10 - Hooray for friends

Facebook post from 08/17/2012

Day 9 - Caleb had a pretty good day today. He ate a little breakfast, most of his lunch, and a little dinner! He is still having occasional high blood pressure and some nausea, but he was in much better spirits today.
I'm SO grateful that his friend Pohai was able to come down and spend almost the whole day with him!! He stayed from 11am to 8pm and played ps2, cards, settlers if Catan, and watched the first LOTR movie with him. He really needed that!! Thank you Pohai!!

(This photo is from 08/24/2012.  Pohai came and played games again)





Facebook comments:

EYS: :)
August 17, 2012 at 2:42am · Like

MWL: Oh yay for friends!
August 17, 2012 at 11:05am · Like

HYN: Awwww, what a great friend he has! We pray for you all!

August 18, 2012 at 9:12am · Like

15 August 2012

Day 8- Feeling a little better

Facebook post from 08/15/2012

I slept like a log last night! Eight full hours!!...but the trade off for not getting up with a cute baby all night was being woken up at 8:20am by six adults standing around and whispering about Caleb in the room...lol!! ;)
Caleb slept good last night, ate a bowl if cereal, drank some juice (he hadn't eaten in 3 days!), and is now peddling his floor bike, facebooking, and has a smile on his face!! He still doesn't feel great, but he feels so much better than the last two days!! Hip hip hooray!!


Facebook comments:

RLJ: Good to hear that he is feeling a bit better!! He is so brave!
August 15, 2012 at 2:19pm · Like

PF: That is great news to hear!
August 15, 2012 at 2:25pm · Like

AB: So glad that he is feeling better. I hope it just gets better from her on out! Glad you could be there for him! Let me know if you need anything.
August 15, 2012 at 2:34pm · Like

MLW: Ok, I have an odd question...What is the cool peddling thing for?
August 15, 2012 at 3:33pm · Like

MJ: Hahaha! Physical therapy. He has to do exercises so he doesn't get jello muscles from sitting in bed all day for a month.
August 15, 2012 at 3:38pm · Like

MWL: Thanks...I love neato toys..haha
August 15, 2012 at 3:52pm · Like

DL: need a work out mat? and some weights??? we could defunk them!!! hahhaaha
August 15, 2012 at 4:12pm · Like

LSV: Glad he is feeling better!
August 15, 2012 at 4:16pm · Like

EYS: YAY! That is great news :)
August 15, 2012 at 4:54pm · Like


CS: I get on facebook and read what is happening through my tears. I don't have proper words to express my feelings. Caleb is never far from my thoughts and Brooklin is a hero, just as others have said. These two are my first grandchildren. They both started their lives, living in my basement. Brooklin was old enough to sneak up the stairs and see us whenever she wanted to. Caleb was a happy, always smiling baby. You have both grown into the kind of teenagers that eveyone wants their children to be but few are. You both have made me proud. Love, Grandpa Strasser
August 15, 2012 at 5:01pm · Like · 1

KB: Awesome!! That is great news!! Tell him hi from the Banks Family and that we are thinking about him :))
August 15, 2012 at 5:13pm · Like

HO: So glad he is feeling better!!!!
August 15, 2012 at 5:16pm · Like

MLW: So glad to hear that!
August 15, 2012 at 5:58pm · Like

Gma Pita
Gma Pita Cheehoo for Caleb and cereal! <3 div="">
August 15, 2012 at 7:26pm · Like

KOB:@Charlie: Now we are all reading this with tears in our eyes! These are two wonderful people, and they are pretty terrific grandparents, too!
August 15, 2012 at 9:01pm · Like

RRS: WOW Charlie even gave ME tears.....he has a soft heart under that "tough guy" exterior.
August 15, 2012 at 9:42pm · Like · 1

TRL: So great to see him up and about :)
August 15, 2012 at 11:44pm · Like

14 August 2012

Bone Marrow Donation and Transplant Day

IV in and ready to go
Today was very long and very emotional! Brooklin's procedure took three hours, but she came out all smiles. After collecting 1200ml of bone marrow, the doctors sent the blood to be processed at another facility. Brooklin received a transfusion of her own blood that she donated for herself during her time in the operating room. She is pretty sore now, but has some medication to lessen her pain. She surprised the doctors by getting up and walking (very slowly) around Caleb's room just hours after having her procedure.
Dressed and ready for her procedure
     
Screenshot from my facebook feed.

Out of surgery and in recovery.


















Eating an otter pop in recovery
She felt much better after having lunch!



Caleb's procedure took a little over an hour. The first bag and a half (of three bags) of bone marrow for the transplant were the hardest. Caleb's blood pressure spiked to 175/100 and he had a massive headache. (all "normal" reactions that the doctors were prepared to address). He was sobbing and grabbing his head it hurt so bad. His muscles were also making him twitch and jerk uncontrollably. I tried really hard not to let him see me crying...and I just kept rubbing his hands and wiping the tears off his face. I am so grateful that Brooklin was sleeping through the first part of the transplant and didn't see him in so much pain. She had such an amazing spirit through all of this today! 





After they gave him some medication to lower his blood pressure, he calmed down and went to sleep. The last half of the transplant went fairly smoothly. He even got up and stumbled to the bathroom twice during the procedure...which is just like a blood transfusion. They just hook the bag of bone marrow up to his IV and let it flow in.  

On a side note...Caleb had been watching Star Wars Episode III: Revenge of the Sith before the transplant started.  As his blood pressure was spiking and he was having the hardest time, there was ultra-dramatic music playing in the background.  It was at the part of in movie where Anikin is fighting Obi-Wan in the lava and loosing his limbs and then becoming Darth Vader.  It was kind of weird and crazy that it happened that way.



Tray full of medications for anything that could go wrong...
So proud of these two for making it through all this!!



They were watching Star Wars throughout the transplant

Resting during transplant


Dr. Wada, Dr. Glaser, Carol, and 2 nurses


Seriously high blood pressure!

Brooklin's IVs

One of three bags of bone marrow


The most touching part of this day was when we were leaving to take Brooklin home, Caleb got up and hugged me and then my sister...and then he gave his sister the sweetest hug I have ever seen. They were both in pain and really tired, and that hug just made my tears flow freely. I love my children and am grateful they all love each other so much. I am also grateful that God and his angels were there with us today helping us make it through, and that I have such amazing friends who cared for my other children today!



At home resting with baby sister.

13 August 2012

May The Force Be With You, Harry Potter

When we were doing all our initial meetings with hospital staff, the child life specialist told us that they could decorate Caleb's room in any theme he wanted.  Our family LOVES Star Wars and Harry Potter!  I think for Caleb, Star Wars wins out just a little over Harry Potter...but both are pretty interchangeable when it comes right down to it.

The child life specialist told us on the first day that she had ordered some decorations, but they weren't in yet.  This is what they had in the room for him on the first day.

Everything pictured is from the hospital...except for the PS2.  We brought that from home for him


Before Caleb went into the hospital, we bought him a 1200+ piece Millennium Falcon Lego set.  He was kind of sneaky about getting me to buy it for him.  The day before his surgery, he asked to go to Barnes & Noble at Ala Moana for his last outing before being in his hospital room for a month.  After Barnes & Noble, he wanted to go to The Apple Store and The Lego Store.  While we were in Lego, he was drooling over all the Star Wars sets.  He turned to me and said, "You know mom...I'm going to be in the hospital for a month...  I'm going to get pretty board in there...  You should get me some of these Star Wars Legos so I will have something to do while I'm in there..."  {insert sneaky smile here}.  I couldn't resist his sweet little face and got it for him!

As soon as the nurse got him settled into his room after his Hickman placement and stepped out the door, he turned to me and said, "I have itchy fingers!  I need to start on the Millennium Falcon now!"  He had it completely done in a day and a half!!






Today the rest of the decorations came in. =)  They got him one set of Star Wars and one set of Harry Potter wall clings.  Brooklin and I (along with Brother Clyde) went to town putting them up all over the walls.  Caleb wasn't feeling very good, so he just smiled and enjoyed our company.  Here is what we came up with...


Harry Potter surfing on the Millennium Falcon
Yoda teaching Ginny about "The Force"


An Ewok with a potion on a stick
Boba Fett riding a broom towards the Death Star...and an X-Wing Fighter





May the force be with you, Harry Potter!  Dumbledore shooting a spell towards Luke Skywalker...who is riding a broom and swinging Hedwig around on his light saber.



My personal favorite!  Han Solo broom surfing

C3PO, R2-D2, and Ron Weasley

Chewbacca being sorted into the Hufflepuff House 

Hermione
Princess Leia